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Invisible

No dementia carer should feel invisible. However, many of the carers who responded to our 2023 survey to share their experiences of caring, told us this is exactly how they feel.

Dementia carers are in desperate need of emotional and practical support to help them cope with the complexities of caring for someone living with dementia. However, carers have told us that they feel “invisible” to health and social care services and like they “don’t matter”. Frances Lawrence, CEO

Dementia carers shouldn’t be invisible

Over 1300 dementia carers shared their experiences with us in our 2023 survey.

They told us that they were feeling forgotten, scared of what is to come and struggling to cope. Nine in ten carers were reaching crisis points.

Their responses gave us invaluable insights and informed a set of recommendations that we have been sharing with policy makers.

Read our Invisible report
Read our Invisible report

Our recommendations

Significant investment in social care and the social care workforce is long overdue. The importance and contribution of social care must be valued equally and in partnership with healthcare. Funding should be sufficient to ensure that statutory duties to support carers can be met by local authorities on a timely basis and provide for an informed workforce with understanding of dementia and dementia care.

These strategies must be long-term and fully funded and include identification of carers, recognition of their individual needs and rights and access to personalised support.

Recognition, identification and support of unpaid carers requires strong collaborative working between health, social care, voluntary, community and social enterprise organisations, especially as not all unpaid carers will identify themselves or recognise themselves as carers.

As laid out in legislation, as soon as someone identifies themselves, or is recognised as a carer, they should be offered the choice of becoming a carer and then of the levels of care they are comfortable to provide.

All family carers are entitled to a carer’s assessment which should identify the individual support needs of the carer. Contact with carers by health or social care professionals should be proactive, with regular outreach made by a named contact to check on a carer’s well-being and changing needs.

Dementia carers must be able to access quality and varied support and information which should be informed by and co-produced with carers.

It’s essential for carers’ well-being, and their longer term ability to provide care, that carers feel supported and understood by wider society.